What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

New York Times Bestselling Author Lisa Genova to release Inside the O’Briens

New York, NY (April 7, 2015) – On April 7th, New York Times bestselling author and neuroscientist Lisa Genova will be releasing her 4th novel, Inside the O’Briens which is about a family dealing with Huntington’s disease. Lisa’s previous book, Still Alice, was made into a major motion picture starring Julianne Moore, Alec Baldwin, Kristin Stewart and Kate Bosworth. Julianne Moore won an Oscar, Golden Globe, SAG and BAFTA Award for best actress in her role as a woman with early onset Alzheimer’s disease.

Inside the O’Briens, published by Simon & Schuster,has received excellent reviews and is expected to bring a great deal of awareness to the devastating impact that Huntington’s disease has on an individual and their family. The book also includes a call to action to support HDSA.

“Lisa is a dear friend to the Huntington’s Disease Society of America and this incredible story will let the world know why HD is the quintessential family disease,” Said Louise Vetter, CEO at HDSA. “With the success of Lisa’s previous novels, we are confident that Inside the O’Briens will bring light to the Huntington’s disease community similar to how Still Alice did for Alzheimer’s disease.”

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.